Tuesday, September 21, 2010

Senior Pictures




Check out a few more of Mary's senior pictures HERE


All I can say is .... WHAT HAPPENED TO MY LITTLE GIRL?



Sunday, September 19, 2010

Just a Picture


Mom and Jack having a conversation 
(captured by Ryan House staff)

Saturday, September 18, 2010

Portrait Day

Mary had her senior portraits taken today by an awesome photographer - Doni.

I snapped a picture with my phone while Doni was taking pictures.  We can't wait to see Doni's pictures.



We are spending another weekend at the Ryan House.  Ryan - the "Ryan" of Ryan House is here this weekend and he and Eric have been having a great time together.  It's nice to see Eric interact so easily with kids with disabilities.  Seeing Ryan and Eric together makes me wish so much that Jack was communicative - it would have made for a much closer relationship between him and his sibs.

Oh well . . . Que Sera, Sera.

Hope you all are having a great weekend!

Thursday, September 16, 2010

What's Wrong With This Picture



Day: Tuesday

Event: class field trip to Rock and Mineral Museum

Dressed in 3rd grade class shirt - check

$10 spending money for gift shop stuffed in pants pocket - check

Sack lunch with name written on the outside - check

All set and ready to go.


What's wrong with this picture?

Field trip was Wednesday, not Tuesday.

Me: "Eric, please tell me you weren't the only one in your class who got the day wrong".

Eric: "Yes mom, I was the ONLY one in my class wearing our class shirt today."


Crap.

I swear I am always screwing up something when it comes to Eric and homework/projects/special events/field trips.  I'm clearly too old and forgetful to have a kid in the 3rd grade.  Tomorrow is Grandparents Day at Eric's school.  Perhaps I should go. I doubt anyone would question whether I belong.


Fortunately, Eric is pretty laid back about all his mom's screw-ups.


Wednesday, September 15, 2010

Why I Love SLCH

I emailed Jack's ophthalmologist at 6:44am this morning letting him know that Jack has a bronch scheduled on Friday, October 8th in the event he wants to perform an EUA (exam under anesthesia) of Jack's eyes while he is sedated for the bronch.

Received a response from Jack's ophthalmologist at 6:58am letting me know that "Yes, we will want to do an EUA at that time".

Received a call from the ophalmologist's scheduling nurse at 12:30pm letting me know that the EUA has been coordinated with ENT's broch and both docs are on the schedule for their respective procedures.

Not in a million years would the doctors in this City have coordinated procedures, let alone do it so quickly and efficiently.

I LOVE St. Louis Children's Hospital!

Saturday, September 11, 2010

Logistics


5:00am: alarm goes off, get out of bed off the couch.

5:15am: Mark walks in the door after working all night.

5:20am: set up baby monitor in Mary's room; wake up Mary and tell her that she is on "Jack duty" and to listen for any alarms.

5:25am: Mark goes to bed in Jack's bed (so he is as close as possible to any alarms that may go off).

5:30am: leave house and go pick up sister #1.

6:00am: drive with sister #1 to meet sister #2 at our walking trail for 1/2 marathon training.

6:30am: arrive at destination and start walking with sister #1 and sister #2.

6:30am - 8:30am:  walk 8.5 miles and pray the whole time that if any of Jack's alarms go off, Mark or Mary will hear them.

9:00am:  Call Mary on her cell phone as I'm driving home and tell her to get Eric up, dressed and fed breakfast.

9:25am: arrive home; wash face; change clothes; wake up Mary and tell her that she is still on Jack duty.

9:35am: check on Jack, he's still asleep (Mark now asleep in his bed); head out the door with Eric to take him to a Sibshop.

10:05am: drop Eric off at Sibshop.

10:45am: arrive back home; breathe a sigh of relief that Jack is still asleep and didn't need anything the last 5+ hours that I've been gone; wake Jack up and start his morning routine.

1:15pm: leave house to pick up Eric; tell Mary she is on Jack duty again.

2:30pm: arrive home; Mark is awake; Jack is fine and all is well.

3:30pm: head to the Mall with Mary to look for something to wear to fundrasier/concert event tonight (because, you know ... I don't have a thing to wear in my closet!)

4:30pm: arrive home with new outfit; get ready for evening event

5:00pm: nurse arrives

5:30pm: leave house with Mary for a fundraiser/concert with my sisters and their families (Mark and Eric elected to stay home).

10:00pm: arrive home, nurse leaves; Jack is happy and I'm thankful that today went off without a hitch!

__________________________

On days like today when Mark has worked the night before, I have things I need to get done and I don't have a nurse during the day, it's all about logistics and having every piece fall into place perfectly.   Today everything went according to plan and I got it all done. Yeah! Most any other Saturday and I would have been stuck because Mary typically works on Saturdays.  Fortunately, she took this weekend off because her cousins are in town and she wanted to spend time with them.  It also helps that Jack is a night owl and not an early riser.

11:47pm: Time for this tired Mom to get to bed and get some rest so I can wake up and do it all over again tomorrow.

Life is good.

_________________________

Some pictures of the cousins having fun at tonight's event








______________________________

 “In daily life we must see that it is not happiness that makes us grateful, but gratefulness that makes us happy.” 

–Br. David Steindl-Rast

Tuesday, September 07, 2010

Is It Fall Yet?

Labor Day has come and gone and it's now time for some cooler, "Fall" weather, yes?  I'm usually not one to complain about the heat because I know it's the price we pay here in the desert for our fabulous Winters. However, this summer is different because I'm training to walk a half marathon.

When I decided to walk the half marathon to raise money for Cure CMD, I thought it would be no big deal. After all, I'm not running a half marathon, I'm only walking it.  I mean, how hard can it be to WALK 13.1 miles?  Well, when it's 110 degrees and humid outside (what happened to our dry heat anyway?) . . .  it is tough.  I've tried early morning and late evening and regardless of the time of day, it is still hot and miserable.  I'm ready for cooler weather now.

I'm optimistic that I can finish the walk before the sweepers provided the weather in Los Angeles in October is much cooler than it is in Phoenix in August.

Thank you to all my friends who have made a donation to date. I really appreciate it ... and you.

In other news ...

Hilary made it back to Rochester safe and sound and is happily tucked away in her dorm room.  After Mark took her shopping for stuff she needed to get her through the next few months, she promptly told him it was okay for him to leave now.  There becomes a point in time when all parents are good for is their money!

Last week, I had to take Jack to an "intake" appointment so that he could remain eligible for Medicaid.   Because of our state's budget crisis, they moved some kids who receive Medicaid to a different program called Children's Rehabilitative Services or "CRS".  I almost opted out of the whole thing because I think it's BS that we have to see doctors who will not be providing care to Jack (because we have private insurance).  But, I figured it was not wise to lose Medicaid either.  We get to the appointment and they tell me we are seeing a geneticist and the appointment will take at least one hour.  I (somewhat) calmly told them that Jack is seen by one of the top neuromuscular docs in the country at one of the top neuromuscular centers in the country and that I know more about Jack's genetic condition than their geneticist ever will.  I handed them the  three-page history/diagnoses/conditions/medications/list of physicians that I had typed up and told them everything they needed to know could be found on those sheets of paper.  When the geneticist came to the room, I explained why I was there (only because I had to be) and I told her that I didn't have an hour because I had to get to work.  She wrote fast and we were out of there in a half hour.  She mentioned some other genetic testing that would tell us if Jack has any other genetic glitches other than CMD. Seriously, do you think I care?  What difference would it make if he does?  I let her know that Jack is an impossible stick and she wasn't even going to be allowed to try.

The doctor told me she was "very impressed" with how good Jack looks given all his "issues".  She also felt the need to tell me that most marriages don't survive having kids like Jack.  Weird.

I really don't like doctors.  Except for those doctors I really like.

Well, that's all I've got my friends. Thanks for checking in!

Wednesday, September 01, 2010

Walking to Support Cure CMD



On October 24, 2010, I am walking the Los Angeles Rock 'N' Roll 1/2 marathon as part of Team Cure CMD.  Cure CMD is an organization whose mission is to bring research, treatments and, in the future, a cure for Congenital Muscular Dystrophies.  As many of you know, Jack was born with a Congenital Muscular Dystrophy.

I am walking to raise awareness and funds for Cure CMD.  If you would like to support me in my walk for Cure CMD, please CLICK HERE and look for the picture of me and Jack and use the donate button next to our picture.

Even if you are unable to provide financial support, your thoughts and prayers for me to finish the race ahead of the sweepers are also very much appreciated.  :-)

Thank you!
Ann